In recent years a new end-of-life care role has emerged in Western society. The term ‘end-of-life doula’ is increasingly used as an umbrella term to identify lay people, primarily women, who provide a diversity of nonmedical supports—social, emotional, practical, and spiritual—for people nearing the end of life, including those close to them. The term ‘doula’ derives from the Greek word meaning female slave or servant and was popularized by the natural birth movement in the 1970s[1] to describe lay-trained women providing nonmedical assistance during and after pregnancy. End-of-life doulas (EOLDs) explicitly draw from this nomenclature and model, providing informed companionship and resources before, during, and after death. In some regions, support may include after-death care of the body and funeral planning, funeral celebrancy, education or services. Collectively, EOLDs frame their work as both a ‘reclaiming’ of community tradition and a new quasi-professional role within rapidly changing social, family and community structures and identity and health care environments. Their roles are still evolving and remain mostly unregulated, with very little evidence of their impact available in the literature to-date.[2]
This PhD research project aims to gain an understanding of the role and function of End of Life Doulas (EOLDs) in end-of-life care, including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to/with palliative care providers and other health professionals,with particular focus on: training and professional accreditation requirements, and understanding of the sacred and spiritual aspects of dying.
The research objective is to explore this recent phenomenon in order to examine and map the current landscape of EOLDs/Death Doulas activities, practice, presence in Ireland and Canada. The study will employ a mixed methods approach inclusive of both a collective case study and critical transformative dialogue research process to inform an understanding of how doulas provide, frame, and navigate spirituality and spiritual care for dying people and their families and how their training, education and professional services, working environments and professional networks, support their role and function in end of life doula service provision.
[1] Raphael, Dana. “Matrescence, becoming a mother, a “new/old” rite de passage.” Being female: Reproduction, power, and change (1975): 65-71.
[2] Donley, Sarah, and Casey Fannin. ““Death Bouncers” and “Spiritual Guides”: How End-of-Life Doulas Provide, Frame, and Navigate Spirituality and Spiritual Care.” OMEGA-Journal of Death and Dying (2024): 00302228241274969